Nothing new, just tired

Saya_G

How do any of you keep positive? I need advice!

My mother has moderate to mostly severe dementia - per her neurologist. She still has days when it seems like she is there; others not so much. She still dresses and eats by herself (albeit slowly). She has physical limitations, which are not related to dementia - she has bad knees (she refused knee replacement when offered many years ago, when she would have better handled the needed physical therapy). She uses a walker most of the time, a wheelchair when the distance is too far - she can't stand for long, has to sit during showers and cannot reach her feet when bathing - making it necessary for her to have assist when showering (I help her).

My sister is her full time companion - they live together. Sis is a cancer survivor, and is very small (she lost a lot of weight, and now eats like a bird). She also has had denture issues (which we are trying to work out) - she has become even more frail - my hubby says he thinks malnourishment. Sis is there 24/7 to watch over Mom - which I know is BIG - and I do appreciate that she is there. 

Sadly, sis is not always kind - she insists that Mom expects her to be the maid. Mom wears depends, but if mom has a leak Sis gets frustrated and doesn't mince works - it's "she pissed" or "sh-- herself". She refused to help my mom with bathroom issues, Mom has to clean herself up (it takes her a long time, but so far she seems to be able to do it). Mom recently had a diarrhea BM that leaked onto her bedroom carpet (she was trying to make it to the John); sis threw a towel over the spillage - called me, left it until I could get there to clean it up the next day. Sis says she and mom are too close for her to do baths or clean ups like bathroom issues - I guess I'm not as close.

Mom and sis have always had a love-dislike relationship. Sis says different, but I believe sis stepped up to 'help' because she needed of a place to stay. At first all was good, until mom was diagnosed with dementia. They do have good times together, as I said, it is a strange relationship. Nothing new on how they interact - been that way for years. Honestly, I couldn't live with either one of them! However, before dementia Mom could hold her own, now she really needs more understanding.

Now add to that, that it appears that Sis has dementia too. She can't remember appointments, or conversations - at first, I attributed her forgetfulness to her just being forgetful or caregiver stress - but of late, it is so much worse! For example, if one of them has a doctor's appointment, I remind sis the day before - several times. (At this point, I drive and coordinate both of their appointment schedules and medical needs.) Then the morning of the appointment I call again to remind Sis that I'm on my way for the appointment - I added the 'on my way call' because Mom recently missed an appointment because sis forgot to get her up, by the time I got there we didn't have time to get her going and to make the appointment on time. Her lapses in memory happens all the time now! Also, her memory of past events is often skewed. 

I pre-package my mom's meds because sis complained that it was too much for her to do - even with trying to make it as easy as is possible, mom misses getting her meds 25-30% of the time. Sis blames mom, says Mom went to bed too early, or got up too late. She also says mom gets in the basket I use to store the packets and messes them up (I do not believe that is happening). I set alarms on sis's phone to help - she turned them off, she said they were bothersome.

BTW.. sis is not married, has one child - she and her daughter have not spoken in about 10 years - so no help there. 

Now add to all this, I have a husband that has health issues, but at this time he is doing pretty well. He is in his early to mid 70s and wants to travel and see the world. He worked and saved all of his life to be able to do just that. 

I am starting to feel him drift away - he still loves me - but he is ready to go. He just took a vacation by himself - I don't want us to live separate lives - I married him because I want to share my life with him!! 

Instead we are tied down with my helping my mother and sister. I'm not going to lie, I recent it! 

Neither of them made any choices for late in life issues. Both have declared that they will NEVER EVER go to a care facility, even when the time comes that they can't do it themselves! Both say, if they get to be too much, just leave them to die!! Like I could do that!!!

As I see it, their refusal places it all on me! For the record, I DO love them both! But I'm really starting to recent that they are making all the rules - and expecting me to live by them.

I need to set boundaries on what I will do for them - without feeling like a crappy dau/sister. 

Any suggestions??

M1

Hi Saya. Boy, this is complicated.  There is dementia associated with some chemotherapy so you may be exactly right that your sister is developing problems also.  Do you have power of attorney for your mom? And who has it for your sister? Is your sister contributing to the household expenses? The fact that your mom needs hands-on incontinence care makes this sound like an untenable situation.  

I would want professional advice here, legal, medical, and psychological. You may need to change your mother's living situation, which impacts your sister, and your relationship with both of them. Perhaps a good therapist for yourself could help you sort out the issues and set your boundaries such that you don't lose your marriage too!!  

Saya_G

M1,

Thanks for your reply. I hadn’t heard of chemo related dementia. I have talked to her oncologist about her forgetfulness, he never said anything about that possibility. A quick internet search tells me we need to do more research.

I do have a POA for my mom; no one has one for sister. I offered at one point, but she was very reluctant to have a POA. At this point I’m glad not to have taken on that responsibility. She is very strong willed - I can see nothing but anguish for the person that ends up with that responsibility. Sadly I’m not sure where that leaves her. I just can’t take on more than I’m already doing - I’ll continue helping best I can, but I just emotionally can not take that on. We do have other sibling, my brother and her are close, perhaps it is his turn to step up.

No my sister does not contribute financially. We have provided my mom a place for over 15 years, sis moved in about 6-7 years ago (a few years after our dad died). At first she paid the electric bill, then when she developed cancer about 2 or so years after she moved in, mom told her she did t have to contribute due to medical bills. She has been cancer free for over 3 years, but she never took the electric bill back on. Neither have car payments (Mom’s car hasn’t been moved in three years); or credit card debt. Total bills, other than medical copays, food, gas or entertainment, total less than $300 @ month. So whether she contributes or not, their living expenses are pretty low.

All that said, neither have big bank accounts (too much bingo I think). Honestly I have always tried to stay out of their finances - we just wanted to make sure mom had a roof over her head and a little extra to spend. I now do my moms bills.

Laura4yoga

So very sorry to hear of the struggles...sending warm healing thoughts your way! We all have been through bits and pieces of situations similar to yours but each family dynamics is so unique! Very hard to advise, but all I can say is listen to your gut (and others) with your heart, and create a deep and wide network of support for you and your loved ones.  ABOVE ALL just know that you are not alone, and YOU ARE ENOUGH! Asking for help (paid or unpaid) is a sign of strength not weakness! Any help will ease pressure and may prevent long term physical and mental health strain for everyone! A quote that stuck with me during the time I was struggling with decision to place MIL into assisted living was, “ just because you cannot do the “caring” doesn’t mean you don’t care!” Not saying it was easy, but after a few months after her admission we all felt such relief! lots of phone calls at first from MIL wanting “out” but she has adjusted and now says how happy she is. I can now go back to being her daughter in law, friend and confidant! Just make sure when the time comes, that the care facility is a good match for HER and meeting her needs! I hope you can return to being daughter, sister and wife knowing you have support here!

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BassetHoundAnn

Hi Saya, 

Wow, you have a tremendous load. You're caring for three people--your DH, your mom and your sis. Four if you count yourself. And you should. You should not feel angry or resentful for having such a huge burden. 

It's called "chemo brain." A friend was unable to drive and to cook, couldn't follow a recipe. For some it disappears and their brain heals and eventually returns to normal. For others, the effects linger in a perpetual brain fog. 

Since it sounds like your sister is wasting away she may be very sick. Recurring cancer does that. 

As others have said your husband is your primary priority. Everyone else's needs, no matter how clamorous, should be behind his in the line. He's been your mate and your love for many years, you can't let him drift away. He deserves to travel and to be happy. 

Would it be possible to hire someone like a Visiting Angel to come for a couple hours every day to help your mother and sister? There are two Social Security checks there. I think your sister should contribute something. Some counties have programs that will subsidize visits from agencies like Visiting Angels for low-income elderly that are still living independently. 

That said you need a plan B for how and where to place your mother, and your sister because their intellectual and physical capabilities are going to diminish. 

I'm so sorry you're going through this. Hugs!

harshedbuzz

Saya-

I am so sorry you are living this nightmare. That is an awful lot of moving parts with which to contend. 

As someone who hasn't any skin in this game my advice would be to put boundaries in place so you can focus on feeding your relationship with your husband while there's still something there. I get that there will be times of crisis when you have to divert energy into mom's needs in the moment, but it shouldn't be a constant. If your brother has left mom's care to you all this time, I would not expect him to suddenly decide it's time to do his share of the caregiving. You need to move forward without him or your sister as baggage. 

TBH, it sounds like you made a deal with the devil exchanging care/companionship of mom for room and board for your sister. Perhaps that was a fair exchange for a time, but it sounds as if your mom deserves and requires a higher level of care than sis is able to provide at this point. 

I would look into a MCF for your mom and consult with an attorney about what you need to do to evict your sister. Perhaps she could transition to low income senior housing since she is unlikely to be returning to work. And then I would start the process of eviction, place mom in a MCF for respite and take a nice long trip with your husband. 

HB

MN Chickadee

So you have the power to do what needs to be done for your mother and not your sister. I would start there. Mom needs more care than sister can offer, it's time to act. You have her diagnosis, you have the POA. What if you schedule a trip with your hubby and use that as the excuse to move mom, calling it a "respite stay." Tell mom and sis you are taking the trip, sis can't perform everything with you not available to do the dirty work, so you've arranged for mom to stay at a facility for a while. Spin it as a gift, sis gets time off from caregiving. Maybe call it a senior hotel to mom's face or something like that. I'm sure you have seen all the threads here on fibs to get a LO into a new home or facility. And then maybe a few weeks turns into a few months and.........

Many PWD declare they will never move, but in the end they don't get to choose. Care needs decide for us, that's just the way it is sometimes. It's our job as POA to make the hard decisions that will keep them safe. And remember neither of them have brains functioning properly, so their time for decision making has passed. Many of our LOs settle in and do well in a facility. They get the structure, routine, oversight and activities they need. Mom would get good nutrition, medications on time, medical oversight from nurses who are tuned in to more than we lay people are. I would get mom moved into a setting with the right level of care and then deal with your sister. Once mom's needs are met it may open up some mental space for you to decide how you want to move forward with your sister and the time to seek legal advice to explore options. Options may be letting Adult Protective Services step in and eventually appoint her a guardian, hiring your own geriatric care manager, seeking guardianship yourself, and more but I would make those decisions later after you have caught your breath. 

Don't let dementia ruin your marriage. Using mom's POA will allow you to take care of mom and yourself.